A flexible model for patient engagement: Achieving quality outcomes and building a research agenda for head and neck cancer

BACKGROUND: This article describes the benefits of patient-driven research in the field of head and neck oncology, reviews lessons learned from establishing partnerships with patients and caregivers, and serves as a model for further patient-driven research endeavors. METHODS: Head and neck cancer survivors underwent training including that of effective communication and the basics of research methodology. They then drove the agendas for monthly meetings that included a multidisciplinary team of providers, facilitated by a physician champion (S.S.C.). RESULTS: The advisors reported concrete areas for improvement of the clinical flow, including the formation of a dental oncology clinic and a post-treatment survivorship clinic. They also refined research topics of interest, such as treatment regret. The advisors have also driven efforts to increase public awareness and have participated in cancer symposiums and local presentations. CONCLUSION: Patient-driven research improves the relevance and implementation of head and neck oncology research and clinical processes